What is palliative care?
Palliative care (table 1) is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. The primary goal is the prevention and relief of suffering by early identification, assessment and treatment of pain and/or psychological distress, as well as addressing spiritual needs.
There are several common misunderstandings about palliative care (table 2). These include:
- a belief that palliative care is only applicable to patients for whom there is clearly apparent irreversible deterioration with death expected within weeks to months
- requires a “handing over” of the patient to the palliative care team
- only relates to physical symptom control in the dying patient and can only be provided once all other therapeutic options are exhausted.
Palliative care is about enabling patients and their families to live as well as possible with serious illness. It is provided by the MDT with access to specialist palliative care, and other relevant services for persistent or complex needs.
Problem-based integrated approach
A palliative care approach should run in parallel with conventional heart failure management. A holistic approach is required, taking into consideration the patient’s symptoms, the carers’ needs, plans and expectations for the future. Educating the patient, carers and families about the condition allows for informed joint decision making.
The level of palliative care intervention at different stages in a patient’s disease process will vary from patient to patient dependent on their needs. Most patients can be cared for in primary care and by their usual secondary care teams, but some require access to specialist palliative care services. This integrated approach allows patients to receive palliative care depending upon need rather than prognosis.8,9
Advance care planning
Advance care planning is defined and recommended by the General Medical Council as “the process of discussing the type of treatment and care that a patient would or would not wish to receive in the event that they lose capacity to decide or are unable to express a preference.”10
There is increasing evidence that advance care planning is important to many patients and leads to improved outcomes such as increased likelihood of end-of-life wishes being carried out, and improved quality of care for both patients and their carers.11–14
One aspect of advance care planning is decision-making about preferred place of care. In the UK, there is a gross disparity between preferred place of care for cancer patients and heart failure patients. Palliative care services tend to be structured to meet the needs of patients with cancer, many of whom have a predictable disease trajectory. A consequence is that most patients die at home or in a hospice. In contrast, patients dying from cardiovascular diseases, including heart failure, are much more likely to die in hospital (59%) with fewer than 1% dying in a hospice.15,16
Discussions about the appropriate “ceiling of care” are as important in both conditions and may help avoid hospital admissions or futile treatment. Advance care planning is particularly important for patients with an implantable cardioverter-defibrillator (ICD). If an ICD is not re-programmed to pacemaker mode only, dying may be complicated by repeated shocks.17
Guidance and training have been developed to help physicians and the many patients with heart failure who want to discuss end-of-life issues.18,19 Patients are involved in decisions about their future care despite uncertain disease trajectories by “hoping for the best, and preparing for the worst.”20-25